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DLA without diagnosis

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Hi I am new to this site and I was just wondering if anyone could give me some information.I am a single, unemployed mother of two. My youngest child is 7 and currently awaiting assessment for ASD. He has been on the waiting list for about seven months and I am not too sure how long it will take before anything happens. I see a job advisor at the DSS every few months and I have mentioned my son's problems to them in the past. They said I might be able to claim DLA for him and Carer's Allowance and they have given me forms to fill in. But when I looked at the forms, they ask what problems the child has etc. I don't know if it is worth filling the forms in and explaining on them that he has no diagnosis yet. I really need some advice on this as I don't know who to ask - I don't really know anybody in the same situation.

Also, could anybody tell me anything about the assessment process as I don't know how long we will be waiting, what to expect, what happens exactly in the assessment and also what to tell my son about it all.

I am a little stressed about it all right now so any advice would be really helpful. Thanks.

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DLA goes by Needs of a person, it does not go directly from a diagnosis, though a diagnosis will help support a DLA claim you can still be awarded DLA if the person you apply for require Assistance, Supervision and guidance more than a normal child thier age, you have to show that your son has impairments that effect his day to day tasks.

 

You have give detailed information on every area of your sons needs, from Dressing, to eating, to playing and socialising.

 

It is a very difficult form to fill in for a person who hasnt got a physical disability and so I advise you get further support from either somewhere like Contact A Family to requesting a referral from your local authority for a welfare rights officer who can go throw the forms bit by bit because they are very demanding and can leave you very emotional due to the difficulties you may face when caring for a child who has difficulties.

 

What are your sons main difficulties at presant?

 

Does he recieve any additional support at school, such as school action or school action plus, you have to prove that your sons needs are more than a normal child, that he requires more support than a normal seven year old, such as supervision, or assistance.

 

It can be difficult to receive DLA even with a Diagnosis, so Diagnosis wont nessasarily make it any easier, what you have to prove at the end of the day is that he has needs and without assistance, suport he can not carry out his everyday tasks.

 

Good Luck.

 

In the early days when my son was under 5, I had to attend a tribunal to give evidence of my sons needs as he did not have a diagnosis, but I was able to prove without a daught his difficulties and needs and they made me promise I would fight for a Statement of Special Educational Needs, and they awarded my son DLA.

 

Recommend Contact a family.

 

Theya are ace, if you ring their helpline they will send you lots of information and booklets, there is also in certain areas of the UK contact a family keyworkers than can go throw the form with you, in our area we had one and she was excellent, but sadly she is no longer available, which is such a shame for families in our area.

 

But you may be in an area where they have the outreach workers so do get intouch with them.

 

http://www.cafamily.org.uk/families/rightsandentitlements/benefitstaxcredits/index.html

 

Good Luck.

 

JsMumx

Edited by JsMum

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Theoretically, you should be able to apply without a diagnosis as it is based on support needs rather than diagnosis. However, the diagnostic process can highlight and document your son's difficulties, and would provide good evidence to support your claim. If you did put in a claim and it was rejected, you can always appeal and submit any additional evidence from any appointments. Or you can put in a new application at a later date.

 

Once you have submitted the form, they will contact people you have told them about on the form, for example, your son's GP, anyone else he may be seeing, and his school. It can sometimes help to discuss your claim with these people. Adults applying for DLA may be required to attend a medical, I don't know whether this also applies to child applicants. If your son did need to attend a medical, you could just tell him it was a doctor's appointment. It's probably not necessary to tell your son about it at all.

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Where there isn't a diagnosis the DLA assessors will write to whoever you give as the consultant and also the school. If they don't see the same difficulties as you he will be turned down.

 

In our own case the special school he goes to put on the form that he plays football. He's never kicked a ball in his life. What he does is stand in the middle of the pitch whilst everyone else runs round him. It was sorted out.

 

Worth trying to do it, but a caution that it may not go smoothly.

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Thank you for your replies.

My son has signs/traits of Aspergers, well that is what most people who see him think and everything I have read about it seems to fit in with his personality and behaviour.

After reading the replies, I have decided I will not apply for DLA because he doesn't need constant care or have anything that affects his needs. It is mainly myself who needs the support as I don't know how to cope with his behaviour sometimes.

You asked what his main difficulties are. It is his behaviour mostly, he does not know how to behave with friends, he doesn't have alot of friends at school because he would rather be on his own. Also, he has tics such as clicking noises with his tongue, coughing, sniffing, squeezing his hands and jumping. It can get embarrassing though because he also has a habit of repeating what somebody has just said so we could be in a shop and a customer will ask for something and he'll repeat what they've just asked for. He doesn't like loud noises and often shouts at other kids if they are making alot of noise which is also embarrassing!

So, it would be logical not to award a child with behavioural problems with DLA as he doesn't need any assistance. I can imagine a child with ADHD would probably be in the same situation?

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I would be willing to bet that you do provide more care and assistance for your son than you would for another child the same age.

 

Assistance can mean reassuring, coaxing, encouraging, taking extra time to reward good behaviour, taking extra time to explain things.

 

Does your child wash and dress himself - or does he need frequent reminders or encouragement?

 

Does he sleep through the night?

 

The issue as I see it is that DLA is awarded for extra care due to a disability - therefore what a diagnosis does is prove that your child's behaviours are related to a disability. That doesn't mean you need a diagnosis though, just that it's a little harder without one.

 

Take a look at the Cerebra guide to claiming DLA - it's on the parent support section at www.cerebra.org.uk - I think from memory they do a 5 min self test thing to to indicate whether it's worth applying. NAS also has some useful info on DLA.

 

Good luck,

 

 

Carol

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I'm sure you're doing far more than you realise. DLA is not only physical care it's for anyone who needs someone watching over them and guiding and prompting, travelling with them on public transport, keeping them safe near roads, making sure they eat without setting the kitcen on fire, helping them choose appropriate clothing to wear, remembering to bathe, settling at night, getting up with them if they wake.

 

My non-disabled 7 year old needs minimal help with all of these things, can make me a cup of tea and put a load of washing on with just a little verbal guidance. [who said slave-driver?!]

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Well, I phoned them today about my son's case and it looks like i'm going to be waiting another 12 months until he gets an appointment.

So, I think the only thing I can do with regards to the DLA forms is to fill them in and hope for the best!

Right now though, this is how I am feeling - :wallbash:

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This guide may help you to fill in the form:-

 

http://www.cerebra.org.uk/Resources/Cerebra/Parent%20Support/dla_guide_nov07.pdf

 

I and others I know who have children with ASD/PDA/ADHD have found it very useful

 

I know someone who has succeeded with claiming DLA for their child without a finalised diagnosis (they were turned down first then phoned to discuss the decision, asked for them to relook at the claim and then was awarded it. the child does get some help at school - not physical support etc and specific help with regards to making friends, accessing chill out space if upset etc)

 

If you have any reports etc that detail some needs and support your claim then send in copies with your application - iep's etc can also be useful and save time especially if they are recent information they may not have to write to as many people. Always COPY your application form too before you send it so you can see what you have put in case you need to appeal

Good luck X

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The Cerebra guide is excellent, probably the best advice guide for DLA I've seen, so please do use it as it's very helpful.

 

I too applied for DLA for my son before he had a formal dx. His first assessment at our local hospital was inconclusive and school claimed there were few significant difficulties there (he had no school support at all, thought he should have), yet we still got an award of middle rate care and low rate mobility which has continued. There were very few reports from professionals that highlighted the extent of his need yet my contribution was sufficient to convince DWP that the claim was valid. He's just received an award at review which will take him to his sixteenth birthday.

 

I recommend not writing directly on the form but to compile your claim in Word with the same headings. Some of the box sizes for your answers are ridiculously small and I think that's intentional - they give you insufficient room to give comprehensive answers then when they refuse an award it's easy to say you didn't provide enough information :wallbash: . Writing it in Word means you can give as much detail as you think relevant without restrictions. The only writing I put on the form is the duration and frequency boxes in each section, signatures and dates where required, and See Attached Document in all the boxes.

 

I bullet-point each heading with Key Difficulties then Additional Support Needed, with a full written explanation below. My last application ran to 26 pages, on top of which I enclosed as many reports as I could lay my hands on, including emails from SALTs, OTs and other agencies where there were no formal reports because that showed that there was involvement with these services. It's also useful to give a list of appointments, phone calls, emails etc that show how much time you're spending on supporting your child. I also give a sample of the visual supports we use - social stories, 5-point scales etc - anything to show the effort that goes in to keeping him going.

 

As Jaded said, you probably don't realise how much you're doing above and beyond what other parents do for their NT children - it becomes habit and you just accept it. But that is essentially what child DLA claims are about - demonstrating how much additional care they need compared to another child of the same age. It can come as a surprise to realise how much you DO do.

 

A word of warning. The forms are horrible to fill in as you focus on the worst of your child and it's easy to feel down when you're filling them in. Take your time, do a little bit each day and remember the positives too. One parent advised that while you're writing the form you keep a separate piece of paper beside you, not part of the claim but just for yourself, on which you write down lovely things about your child. It helps to balance things out a bit.

 

Good luck.

 

Karen

x

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